“Lately I have been contemplating all the difficulties and challenges of having a child with severe dyslexia,” writes Kimberly about her daughter Maddie.
“When Maddie was first diagnosed, I was relieved to finally have an explanation for her struggles, but at the same time I was worried, anxious, and disheartened by the difficult journey ahead. There were several people telling me that she would probably never read, that she would need special assistance for the rest of her life, and that I should try to steer her away from career choices that involve success in academics. It was hard as a mother, who had wonderful visions of her child’s future, to think that it might not be possible, to think that her options were diminished due to something as seemingly simple as reading. Now, I am not a quitter, and I don’t usually give up on things, so I resolved that this would not be the case with my daughter. I resolved that I would do everything I could to help her become an accomplished reader. The problem was, no matter how great my resolve and no matter how hard we worked, we were still getting nowhere. I researched all of the best programs for dyslexia, and we diligently worked at all of them. I did everything that I could think of to help her, including speech therapy and vision therapy. With every new thing we tried, I had hope that maybe THIS one would work. However, over time, I began to lose hope. I began to doubt that anything would work, and I began to view anything that claimed to ‘treat’ dyslexia as nothing more than a scam to take the money of a desperate parent trying to help their child. I had come to the conclusion that maybe this WAS a lifelong struggle that would never go away. Maybe they were right, and I should start steering her toward things in which she could be successful outside of academics.
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“If you do not have a child with dyslexia or know anyone who cannot read, you cannot imagine the feelings of hopelessness, disappointment, and desperation to find something, anything that will work. You cannot imagine how limiting it is in the life of a child to be unable to read anything, to be surrounded by the written word and it being forever out of your reach. Think about all of the things around us that are in written form: signs, pamphlets, instructions, cereal boxes, recipes, sewing patterns, worksheets, movies, electronics, the internet, the Bible, board games, birthday cards, schedules, the buttons on household appliances (such as dishwasher, washer, dryer, oven, etc.), and the list goes on and on. We live in a world that revolves around literacy, and those without are so limited that it hurts to think about it. I literally hurt for my child every day because of all of the things she is missing out on in everyday life. Think about going through life depending on others for even simple things such as reading the buttons on the washer to choose the right cycle to wash your clothes, or getting a new toy and having to wait on a parent to have time to read the instructions to you, or wanting to know more about a subject that interests you but being unable to look it up or find more information on it, or wanting to make a recipe on your own but being unable to even read simple instructions and ingredients, or wanting to do a sewing project independently and not being able to read even the simple instructions in the kids sewing book, or believing in God and wanting to study His word, but being unable to do so because you simply can’t read it.
“I think about all of the times I read something, anything, throughout the day, and sometimes it makes me cry just because I know it is something, seemingly so simple, that my daughter cannot do. In fact, I am crying as I write this just thinking about it. The gift of reading is something so precious and crucial to modern life, but it is something that most of us take for granted. I desperately wanted to give this gift to my child, no matter what it took. So I started looking at the latest research on dyslexia, instead of just reading websites from ‘experts’ on the subject. What I found surprised me. It appeared that, in America at least, there isn’t a lot of actual research going on about dyslexia. Most of the research I found was from other countries. I also found that the ‘gold standard’ of treatment for dyslexia, which was supposedly Orton-Gillingham, actually did not have the research base that I had been led to believe. I discovered that, despite all of the information out there on dyslexia, there is actually no consensus in the scientific world on what dyslexia actually is and what causes it. There are many theories, but no consensus. My first thought was, if they don’t even know what it IS, then all of our efforts are hopeless, because you can’t treat something if you don’t know the cause. Then, in my research, I stumbled upon the Edublox website. The website seemed to have answers to so many unanswered questions, but I was still afraid to hope. When I contacted Susan, I wasn’t sure what kind of response I would get, but I never expected the depth of knowledge and patience to answer all of my questions. I am still somewhat afraid to hope about the future, but I have found myself contemplating all of this over the past week. I have inadvertently found myself dreaming again about what the future may hold for my daughter, and starting to hope that maybe her future isn’t filled with limitations, but with possibilities.”
Click here to read the complete diary.